Wednesday, April 27, 2016

Largest-Ever Autism Research Study in the U.S. Launches

NEW YORK, April 21, 2016 /PRNewswire/ -- The Simons Foundation Autism Research Initiative (SFARI) today launched SPARK, an online research initiative designed to become the largest autism study ever undertaken in the United States. SPARK will collect information and DNA for genetic analysis from 50,000 individuals with autism — and their families — to advance our understanding of the causes of this condition and make progress in discovering possible supports and treatments.

Autism is known to have a strong genetic component. To date, approximately 50 genes have been identified that almost certainly play a role in autism, and scientists estimate that an additional 300 or more are involved. By studying these genes, associated biological mechanisms and how genetics interact with environmental factors, researchers can better understand the condition's causes, and link them to the spectrum of symptoms, skills and challenges of those affected.

"Knowledge is power and SPARK was created because we simply haven't learned enough about the genetics and other possible causes of autism," says Wendy Chung, M.D., Ph.D., SPARK Principal Investigator and Director of Clinical Research at SFARI. "SPARK will help researchers make new discoveries that will ultimately lead to the development of new supports and treatments to improve the lives of people living with challenges. Together, we can SPARK a movement in autism research."

SPARK aims to speed up autism research by inviting participants from this large, diverse autism community that will include individuals with a professional diagnosis of autism of both sexes and all ages, backgrounds, races, geographic locations and socioeconomic situations. The initiative catalyzes research by creating access to study participants whose DNA can be selectively analyzed for the specific scientific question of interest. SPARK will connect participants to researchers, offering them the unique opportunity to impact the future of autism research by joining any of the multiple studies offered through SPARK. SPARK will also take feedback from individuals and parents of children with autism to develop a robust research agenda that is meaningful for them.

"As a mother of two young adults on the autism spectrum, it is very important to me and my family that we take part in autism research opportunities like SPARK that can lead to tangible improvements – both for today's autism community and for generations to come," says Darnell Newsum, SPARK participant along with her two children and husband who live in Brooklyn, New York. "One of my hopes for SPARK is that it can ultimately lead to insights on how best to help children with autism as they progress into adulthood."

About SPARKSPARK (Simons Foundation Powering Autism Research for Knowledge) is a national autism research initiative that will connect individuals with a professional diagnosis of autism and their biological family members to research opportunities to advance our understanding of autism. SPARK's goal in doing so is not only to better understand autism, but to accelerate the development of new treatments and supports.

SPARK was designed to be easily accessible to the entire autism community and was fashioned with input from adults with autism, parents, researchers, clinicians, service providers and advocates.

Registering for this first-of-its-kind initiative can be done entirely online in the convenience of one's home and at no cost. DNA will be collected via saliva kits shipped directly to participants. Once the SPARK participant's family has returned their saliva samples and provided some medical and family history information, the SPARK participant will receive a $50 gift card. SPARK will provide access to online resources and the latest research in autism, which may provide participants and families with valuable information to help address daily challenges.

For researchers, SPARK provides a large, well-characterized cohort of genetic, medical and behavioral data, and will result in cost-savings for researchers by reducing start-up costs for individual studies.

SPARK has partnered with 21 clinical sites across the country, as well as autism organizations, service providers and key influencers to help educate the public about SPARK and to recruit participants. Through these strategic partnerships, SFARI hopes to reach and engage a diverse and large number of individuals and families affected by autism. To find a SPARK clinical site near you, please visit www.SPARKforAutism.org.

SPARK is entirely funded by SFARI, a scientific initiative within the Simons Foundation's suite of programs.

About Simons Foundation Autism Research InitiativeThe Simons Foundation Autism Research Initiative (SFARI) seeks to improve the diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance. SFARI currently funds more than 250 investigators in the U.S. and abroad. In addition, SFARI aims to advance the autism research field as a whole by developing resources for scientists. Please visit www.SFARI.org for more information on all SFARI programs.

About AutismAutism is a general term used to describe a group of complex developmental disorders – autism spectrum disorders – caused by a combination of genes and perhaps environmental influences. These disorders are characterized by deficits in social communication (both verbal and non-verbal) and the presence of repetitive behaviors or restrictive interests. An estimated one in 68 children in the U.S. is on the autism spectrum. The wide range of autism manifestations makes it challenging to study potential causes or treatments, and thus a large cohort, which can be segmented, can substantially advance such efforts.

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